Sleep became a foreign concept to Dad and me when he began to suffer hypoglycemic attacks. These attacks left him mentally disoriented and physically weak. Without immediate food, they could escalate into a more severe condition, leading to a coma or even death. As a result, I set my alarm to awaken me every ninety minutes throughout the night. I would then prepare a snack for Dad—milk and peanut butter on a cracker, pudding, a glass of orange juice—and wake him up to eat.
This routine went on for months until a hospice physician finally diagnosed Dad with insulinoma—and found a medication to better regulate his low sugar episodes.
Going night after night without a sound sleep has devastating effects on both the caregiver and the one receiving care. I woke up tired, yet I could not nap, even for a short time. Instead, I had to tend to Dad—dress him, escort him to the bathroom, feed him, care for him. My exhaustion made me short-tempered; I did not recognize the haggard, drawn woman who frowned at me from the mirror.
Dad, too, suffered, but he was able to lean back in his wheelchair, close his eyes, and travel to a time and place in which insulinoma did not exist. When he smiled in his sleep, I knew he was again a young man, enjoying his days strolling through the neighborhood or the mall, and his evenings reading the latest mystery by one of his favorite, British authors.
Then, on the day of universal love, I lost it; I call it my Valentine’s Day Meltdown. I could not function. I snapped at Dad, pushed food into his mouth without giving him adequate time to swallow, and wallowed in self-pity. Finally, one part of my brain that still functioned caused me to call the nearby hospice. “I need respite care!” I cried into the phone. The staff member heard my desperation, calmed me, and sent an ambulance to the apartment Dad and I shared. During the ride to the hospice, where Dad would spend five days and I would sleep at home for five nights, I sobbed. I felt as if I had let Dad down.
The respite care provided a diagnosis and treatment. It let me regain my equilibrium by giving me sleep and perspective. The caregiving challenges continued, but my ability to cope improved.
Ronna Edelstein
Pittsburgh, Pennsylvania